fear of the unknown
September 2, 2011 9:26 PM   Subscribe

I'm 21, I might have MS, and the fear is making me go crazy.

I'm a 21-year-old woman. I've had the vague neurological symptoms of what could be MS, or could be something else, for a few weeks now. I won't be able to see a neurologist for five months (I'm Canadian, this is normal for us). In the meantime I am becoming progressively more anxious and upset. I'm having a hard time focussing at work, and am concerned that I'll have the same issues at school this term. I'll be OK for most of the day but start thinking about how I might only have a few years to live and end up crying hysterically for a few hours.

My symptoms don't disrupt my life at all at this moment, it's just the possibility they will get worse. I know MS can be no big deal for some people, but it can be debilitating and/or fatal to others and I can't get that out of my head. And I know I might not have MS - but it seems awfully likely since I have the risk factors of being 20-50, female, Northern European heritage, also Canada has very high rates of MS.

I haven't had a bad life, but for most of my childhood and teen years I was awkward, friendless, and unhappy. It's only been for the past couple of years that I've enjoyed life - now I have great friends, am getting very high grades at college, have big plans for the future. But now I feel like that's all been threatened. I am a very independent person, and I am not in a relationship or very close to my parents; I don't know who will take care of me if I can't get around by myself. And I keep thinking about death, which now seems more terrifying than ever; being an atheist doesn't offer much comfort.

I've been working towards being a lawyer or college professor, both competitive and stressful fields that probably won't be possible for me. I've wanted to backpack through Europe that's equally unlikely. Even the thought of missing on on stupid, typical 20-something things like sex and drugs and partying, which I haven't done much of, makes me feel awfully sad. I have trouble dating as it is; I can't imagine I'll ever have a boyfriend with a chronic illness added to the mix.

I don't know how I can feel better about this and pull myself together for the next few months. I feel like I can't tell my friends this, they are all young and healthy and I don't think they'd understand, and my family and I don't get along. I've never been to a counselor/therapist before and don't know where to begin.

Thank you for your advice. You can email me at metafilterthrowaway@yahoo.com.
posted by anonymous to Health & Fitness (24 answers total) 1 user marked this as a favorite
Your risk factors are very vague - caucasian, age 20-50? That describes so many women! Reading up on MS will only scare you at this point and provide "confirmation." Avoid medical info for the next few months. There will be time later to read up if you have it. It would help to have one close friend or family member to confide your fears to.

Statistics are on your side, though.
posted by Knowyournuts at 9:50 PM on September 2, 2011 [1 favorite]

I'm sorry to hear that this has caused you so much anxiety! My mom had a lump on her face and had to wait a whole year to get it removed (yup, Canadian too). She worked herself up into quite a state because she was positive that the lump was cancerous. In the end it turned out to be benign - just a lump that chose to express itself there.

The thing with anxiety is that it robs you of living in the present, as you mention. My mother couldn't enjoy anything in her life for a whole year because she was too afraid of the unknown as well. It was a very sad time for her and our family.

This doesn't have to be a sad time for you though. "See a counsellor" sounds trite, but it will really help. Even something like keeping a worry journal, and only worrying at certain times of the day might help. If you don't know where to begin, talking to a professional, even just once, might be a good place to start. That's why they are there, and you can find counselling centres that charge on a sliding scale if you are concerned about the cost.
posted by Calzephyr at 9:51 PM on September 2, 2011

IANAD. I had the same experience at about 24 - unexplained spells of dizziness, fatigue, tingling limbs, numb extremities, bad balance. it was debilitating enough to be scary and the possible diagnosis of MS made that worse. But. BUT: all my symptoms turned out to be related to a neck condition (I still have it, it's chronic, but manageable). YMMV.

A friend of mine does have MS. She has lived with it now for almost 28 years. She is married (second time), has children and now grandchildren. She is a successful lawyer with a high-powered government job. She exercises, travels, plays with the children, gardens, drives, dances, and I think that until a couple of years ago she still went skiing once a year.

You may not have this condition. If you do, it doesn't mean the end of your life. Plenty of people live with & manage chronic conditions and it is highly likely that if you are unlucky enough to have MS, you will be able to do that too.

It doesn't sound like you are incapacitated right now. Keep doing everything you are doing - go to class, do your assignments, socialize with your friends, get a little crazy. Do some of those things you are afraid of never being able to do. Also: get yourself to a counsellor or therapist to deal with your anxiety. CBT can be a lifesaver. Don't shut the door on life already, it's too early for you.
posted by yogalemon at 9:52 PM on September 2, 2011 [6 favorites]

I'm Canadian and I know the medical waits are absolutely insane.

Also, I suggested this book before but Travels by Michael Crichton has a chapter on him thinking he has MS as he is ending his medical school career. (turned out to be a false but scary alarm). Either way, you need to get through the next few months mentally intact so please ask your GP or whoever set up your neurology appointment for a recommendation for a counselor or therapist as soon as possible. Good luck and best wishes.
posted by bquarters at 9:55 PM on September 2, 2011 [1 favorite]

There's only one piece of advice I can give you. Well, okay, two.

First: there are so many other things you might have that would not be MS. Hell, I've had temporary muscle injuries that mimicked it, that lasted several weeks. Odds are very, very, very good that you do not have it, and if you're worried about having it at this stage (that is, before you've even seen a doctor), you are way premature with the worrying.

Second: let's pretend you do have MS. Well, then what? You keep right on going, that's what. After all, as you say, some people can live with it. Perhaps you are one of them! Only one way to find out: keep living your life. So, stick to your plans, stay focused on your goals, and (of course) get that doctor's checkup. Then, twenty years from now when you look at the wonderful life you've built, and (of course) you don't have MS, you can think "gee, it sure was a good thing I kept going instead of putting my life on hold for a disease I didn't even have!"
posted by davejay at 9:55 PM on September 2, 2011

Oh, and I have a large lump on my neck, and I was apparently the only person I knew who wasn't worried about it. I got it checked out, obviously, and it's nothing to be concerned about. One of these days I might get it removed. But to hear everyone else around me, I probably had cancer and wasn't that horrible.

Don't do that to yourself. Either you'll turn out to be right (extremely unlikely) and so it won't have changed anything, or you'll turn out to be wrong (extremely likely) and so you'll have just freaked and stressed yourself out for nothing. Besides, if you start focusing on I-HAVE-MS, you'll end up thinking you have MS symptoms that you don't even have, which will keep the doctor from finding out what the actual problem (if any) is. So knock it off.
posted by davejay at 9:58 PM on September 2, 2011 [3 favorites]

Though you haven't provided details about your symptoms and I am nothing even remotely resembling a doctor, it doesn't sound like your concerns are based on a lot of evidence. It's good that you'll be checking in with a neurologist, but a few weeks of "vague neurological symptoms" combined with "being female" and "being part of an extremely large ethnic group" seems like quite a few logical leaps away from "I almost certainly have MS and I'm going to die in a few years." Once again, I have no medical training, know very little about MS, and know nothing about your particular situation, but this sounds like textbook catastrophizing.

Now, obviously that isn't going to convince you not to worry about this; hopefully your appointment with the neurologist will allay your concerns. So how do you deal with this for the next five months?

I've never been to a counselor/therapist before and don't know where to begin.

You mentioned that you will be returning to school soon; your college almost certainly has a mental health center that can book you an appointment with very little wait. Tell them that you are experiencing extremely disruptive levels of anxiety -- this is certainly the case, whether or not the anxiety is warranted. They can set you up with a therapist. As for where to begin, you begin the same way you began here: you tell the therapist that you are worried you have MS and that this worry has been consuming your life. He or she will help you get through the next five months.

I'm also going to pull an Ironmouth here and suggest that there may be something else, some deeper anxiety, that you are distracting yourself from by worrying about this. Not that the prospect of a debilitating illness isn't a good excuse for anxiety -- but you seem to be going on so little here that I wonder if it isn't some sort of redirection of other anxieties.
posted by enlarged to show texture at 9:58 PM on September 2, 2011 [5 favorites]

It's a long, long way from "vague neurological symptoms" to "I have MS". I don't mean to minimize what you're going through, but I would suggest that you went from A to Z awfully quickly here. There are eleventy billion things it could be without it being MS, and I would suggest that spending the next five months in basically a 24/7 state of panic about the worst case scenario will be worse for you than anything that actually is going on.

Go to a therapist. As soon as you can. It's not "all in your head", so don't let people convince you of that - but again, there's a long way from where you are to where you think you might be. Relax, get some sleep, and wake up tomorrow determined to find answers and not to spend your life fearing what could be.
posted by pdb at 10:26 PM on September 2, 2011

Do your parents/siblings/grandparents have MS? My mom has it, which is one reason I decided not to have children. It's not strictly genetic, but it does seem to occur in families. Being white, Canadian and female is a description of the patient population, but not all white Canadian women get it.

Diagnosing it is a picky, awkward process of eliminating everything else, usually: it's hard to pin down, and may be a bunch of syndromes linked together. So get yourself a therapist and talk about your fears, as it may be a while before you get a definitive answer.

And, also: MS, if that is what it is, is often not that incapacitating. My mother has had it for 40+ years (my birth precipitated it, I think) and she has one of the harder hitting forms (primary progressive, which means that all her losses have never been recuperated: only about 10 to 15% of patients have this form, which is the most severe). 70-80% of diagnosed patients have a much milder form: attacks (where you lose function) followed by recuperation. Even with that, my mom is 82, now in a wheelchair, of course, and extremely healthy but for the MS. Most people with MS live out a full life span.
posted by jrochest at 10:47 PM on September 2, 2011 [1 favorite]

I have had a diagnosis of Ms for twenty years. They are now saying it isn't MS so I will be re-entering diagnosis limbo land soon. If you we're having an acute MS exacerbation you would be seen but that doesn't mean you would come away with that diagnosis. It is a long test filled road for most people. Also the treatment that exists today is amazing if you get a diagnosis. Does your college offer counseling? No matter what it turns out to be you sound like you could use some support right now.
posted by cairnoflore at 10:51 PM on September 2, 2011 [1 favorite]

Also: try looking in on-line support groups for the disease, where everyone knows exactly what you're going through and can offer very specific support.
posted by jrochest at 10:54 PM on September 2, 2011

I did this too. I realised that it was getting a bit ridiculous when I was planning increasingly elaborate ways of killing myself at the point when I 'inevitably' became too disabled to want to live any more, then dissolving into floods of tears at the thought that I might be too disabled to carry out the excessively complicated plan. The realisation that is was ridiculous did not, unfortunately, stop me from doing it.

My symptoms turned out to be caused by, best guess, magnesium deficiency combined with horrible job stress. They went away when I lost my job and stopped eating in the horrible work canteen, who knows which one made the most difference....

I saw a GP about my symptoms, and he started investigating possible non-neurological causes, hence the prescription of magnesium supplements and some other stuff. You don't mention whether your GP has done anything other than refer you to the neurologist (and I don't know how your health service works), but it may be worth going back to the GP to say that a) you would like to do SOMETHING about the symptoms over the next five months, and b)you're experiencing crippling levels of anxiety.

Best wishes. It really, really, probably isn't MS.
posted by Lebannen at 2:27 AM on September 3, 2011 [4 favorites]

I had the same symptoms during a bout of intense job stress. I asked the doctor about it, and he admitted that HE had thought he had MS when he was in medical school.

These symptoms, and these fears, are super-common. And if you look at the online MS forums (don't, please don't) you see all kinds of people analyzing their symptoms and self-diagnosing MS. It's very sad and depressing, and it ignores the medical rule of thumb (which I heard on AskMe) "when you hear hoofbeats, you don't look for zebras."
posted by jayder at 7:12 AM on September 3, 2011 [1 favorite]

Wait what are your symptoms? Did a doctor tell you this or you just think you have it?

I have an uncle in Ireland who has had MS for many years and other than it making it him really tired, you wouldn't know it. I have had other people I know fair less well but it's not necessarily a death sentence.
posted by sully75 at 7:12 AM on September 3, 2011

Whether or not you have MS, you will not have new information for months. Every time you start to think about it, tell yourself that you will think about how to deal with MS if and when you have a diagnosis.

Pretend you are a bad dog and need to be redirected every time you do the bad thing until you, the bad dog, develop the self control to stop having/ giving in to the bad impulse.
posted by Lesser Shrew at 10:30 AM on September 3, 2011

I appreciate the lightness of your suggestion, Lesser Shrew, but constantly calling yourself an uncouth animal, or anything else negative, when you are likely in the midst of serious anxiety and/or depression is a therapy no-no.

Just start acknowledge when you find yourself having this runaway thoughts. That it's, just say to yourself "Okay, I am having the thoughts now." Or "Oops, MSing again." Or whatever.

That will acquaint you with just how often you are having these thoughts, which might surprise you.

So, you acknowledge each time and that gives a good idea of just how much time you are wasting on this obviously unpleasant activity. Then, when you're ready, you ask yourself would you prefer to be doing something else?

You'll want some therapy, or to at least read up on anxiety (because that is what you have, not MS.)
posted by TheRedArmy at 12:12 PM on September 3, 2011

Guess I have some kind of typing virus. Sorry.
posted by TheRedArmy at 12:16 PM on September 3, 2011

A close family friend has MS and became very depressed after the diagnosis (in his early 20s), and he basically went off the radar screen for several years. We didn't hear from or see him much at all and he was basically just feeling sad and hopeless. Now he's married and has a young child after re-entering the world of the living, and although he's still sad at times about having MS and how it may interfere with his ability to raise his child or see him grow up, I think he regrets the loss of the earlier years where he actually had fewer symptoms but really wasn't living life/seeing friends and family because he was so withdrawn. Regardless of whether your symptoms turn out to be MS, I think the lesson I took away with it is that it's important not to overlook what you have today by focusing on what you may not have tomorrow. Anyway I just wanted to add my voice to the chorus saying that having MS doesn't preclude having a career, family, traveling, and your other dreams. I think you should look into ways to distract yourself from the worries that also involve doing things you've always wanted to do. If not backpacking in Europe at this moment, maybe taking up some hobbies you've always been interested in, and learning new things... either way in the end I'm sure you wouldn't regret it.
posted by treehorn+bunny at 12:17 PM on September 3, 2011

Another thought. Is it feasible to fly to the US and consult with a physician here? I suspect an initial consultation may be enough to put your anxieties to rest. Even if it costs you a thousand bucks, it might be worth it to avoid five months of hair-pulling anxiety abd fear.
posted by jayder at 2:12 PM on September 3, 2011

I have MS and my life is not over.

You probably don't have MS. 20 would be a very young onset. Even if you do have MS your life is not over.

You can spend the next five months holding your breath and staring at your feet, or you can spend them living. I recommend the latter. Sex, fun, education, career-building, helping people, all those things are much more fun than holding your breath and staring at your feet because you might have some ailment which is actually pretty treatable most if the times these days anyway.

Keep living, really. Keep living for the next five months, and then keep living regardless if what the diagnosis is. Don't let it slow you down. If anything, the prospect of having a potentially progressive disease should increase the fierce urgency of living your life to the fullest now.
posted by alms at 7:59 PM on September 3, 2011 [1 favorite]

My honest best advice is this:

Find a cheap flight to Cancun for a week, party your face off, see a neurologist there for super cheap, and, while you're at it, it might be worthwhile too to see a psychologist/psychiatrist and ask them if you might have an anxiety disorder.

If you can't afford it, my next best advice is:

Get a part-time job, save all your wages for a month or two, find a cheap flight to Cancun, etc.
posted by Ashley801 at 1:33 AM on September 4, 2011

(Or if Cancun isn't to your taste, then Bangkok.)
posted by Ashley801 at 1:34 AM on September 4, 2011

My mother has MS. Her diagnosis was made by an opthamologist (and confirmed by neurologists) when an MS attack manifested itself as temporary complete blindness in one eye. I believe she has the relapsing remitting subtype, where symptoms present themselves only periodically.

She's been diagnosed with the disease for something like 30 years now. She is a high-powered, Ivy League-educated architect who likes to spend her free time gardening, traveling, and going to Yoga classes. Since she was diagnosed she has gotten married, had/raised two kids (me and my brother), and traveled the world. It has not hindered her in any way whatsoever, even when she was experiencing attacks.

True, she could be a rare case of someone for whom MS is "no big deal" -- her neurologist has told her that she should be a poster child for her drug, which she is apparently responding extremely well to. But you have no real reason to believe you couldn't be the same way; you don't even know you have MS.

I say do what my mom has done and take alms's advice: live like you dont have the disease, and don't let it slow you down. You'll find out in 5 months; if it turns out you do have MS, which is possible but very unlikely, with proper care and treatment you can live a normal life.
posted by malthas at 9:26 AM on September 4, 2011 [1 favorite]

I thought I had MS, because I had "all the textbook symptoms". I even went to the ER with symptoms of a stroke which could also be MS symptoms (slurred speech, brain fog, forgetting words or using wrong words, confusion, tingling in hands and feet, bizarre euphoria, etc.). I was pretty much dismissed from the ER because I wasn't bleeding and my EKG was fine. I ended up having a private MRI and a bunch of blood tests to rule out everything else. Apparently, aside from being a bit overweight, I am in perfect health on paper. My MRI came back clean, etc. etc. I was actually sort of disappointed in a weird way because I thought I had finally figured out what was wrong with me. I had been told by my family doc (the MRI was from a clinic doctor I visited for a second opinion), that it was just symptoms of mild to moderate depression and anxiety, which I've been diagnosed with before. I haven't really done anything, my doctor and I decided at the time that I didn't need to go on medication or anything and that I would just monitor the situation, knowing that it wasn't anything serious, and try to work on myself.

So, basically, I'm saying that it could very easily be nothing or something much simpler. Do you have any symptoms of depression and/or anxiety? There are basically a ton of other diseases that present similarly (from my own, non-professional research), which is why they usually rule out a bunch of stuff before ordering expensive MRIs (also, in BC there was a ONE YEAR wait period for an MRI scan, so my mother was kind enough to pay the $800 for a private one). And if it is MS, which is not terribly likely as mentioned above, really the majority of MS patients IIRC have the relapsing-remitting type and can live a relatively normal, healthy life.
posted by 1000monkeys at 12:45 PM on September 4, 2011

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